Tag Archives: patient

On Being Chronic (and Human)

Although the academic year ended nearly a month ago, it’s still hard for me to believe that summer is here. Unfortunately, this is because I am (still) exhausted. The end of the semester felt like a race against a million (mostly external) deadlines, like submitting my seminar paper, defending my prospectus, grading portfolios, submitting conference proposal and other application materials, etc. I tried to catch my breath after defending my prospectus and then after submitting my seminar paper, but there was more to do and I’d left too little time for myself to complete everything. I spent my two “free” days at home during the least three weeks of May cleaning, since my house was a disaster. (I mean, I needed to find and return some of my library books, which had racked up almost $40 in fines, scrub things down…things I’d been putting off for weeks or months. Ugh). And for some unknown and INCONVENIENT reason, I stopped sleeping at the beginning of May (due to stress?) and decided to move some of my medications around as a result…which of course caused sleeplessness/exhaustion, cold sweats, nightmares, and general malaise. This went on for about three weeks. I also over-scheduled myself, and during this three-week period I bounced between Maryland, New Jersey, Georgia, North Carolina, and South Carolina. The worst part of everything was that I’d planned for the travel to be a kind of “vacation.”

I hate writing about this because I risk sounding whiny and dramatic. (Though I sense this is a tension that challenges other chronically ill people, too). I *did* enjoy a long weekend in Cape May, NJ tooling around with some of my best friends from college. I *did* have fun visiting with my parents and some of my UMD professors when I was in Maryland. I *did* enjoy my first Rhetoric Society of America (RSA) conference in Atlanta; I heard many smart presentations, made great #medrhet connections, and in general I was so glad I made the effort to attend. I *did* have one great beach day at Hilton Head with my grandparents and extended family over Memorial Day Weekend. (Yes, I’m the idiot who left sunny Atlanta/halfway through RSA to fly to Hilton Head Island as it was pelted by a tropical storm).

But it was really hard. In general, I–my body–felt terrible. My hips and knees ached. My appetite was off. My back was sore. My neck was stiff. My skin was oily and itchy and uncomfortable. I took my pain medication and still couldn’t get comfortable. Without sleep, and with sleep interrupted by night sweats and terrifying nightmares, I was a shell of myself. I tried to enjoy what I could of the “break” I’d scheduled for myself, but I felt like I was drowning.

All of this sounds so trite, but I’m not sure how else to explain it. I still kind of feel like I’m drowning.

But I’m taking a chance and writing about it on my research blog because it impacted my work, my thinking, my progress, and most significantly, my process. The worst part–the thing I’m most ashamed of–is that I submitted a very inadequate full draft of an essay that had been accepted for publication in a special issue of a journal. I received the edits at the end of December and was sure that I’d have plenty of time to expand the proposal. I worked on the proposal with one of my research teams, but I am the lead author. As February, March, and April passed, I knew I had the June 1st deadline hanging over my head and was sure that I’d get to it when school ended. I was sure there wasn’t much work to be done; the proposal was 6-ish pages and the final essay could be a maximum of 15 pages plus citations. Our argument was clear, and it was up to me to flesh it out. My wonderful, committed team offered to help at any/all stages of the writing process, but I postponed sharing my draft with them, waiting until I had more time to work on it. I wasn’t ready. The essay still wasn’t really ready when I submitted it–one minute after the 11:59pm deadline. The editors still accepted it, of course, but I’m so embarrassed. The work is sub-par, even sloppy. I didn’t get my thoughts together until the very, very end, even though I’d been thinking about the project on and off for months. I asked one of my wonderful English grad student friends from college to read what I had around 8:00pm the night it was due, so I did get a little feedback (which was extremely helpful and helped me refocus the argument). But I guess what I’m trying to say is that it wasn’t what I wanted.

I have heard that the “my work is never done” problem pervades academia and keeps smart people from submitting their work for review. This might be part of my issue, but I honestly don’t think that I submitted good work. It definitely wasn’t my best work, and I feel like I let my research team down. Of course, this wasn’t the final version of the essay, since the editors will send me back at least one more version before the essay goes to press. However, I know that the next edits are supposed to be finalizing copyedits, not major issues with the writing style or arguments, and I’m ashamed that I submitted work that isn’t really up to par.

I guess I should have asked for help, but I wasn’t sure how. With chronic illness, I never really know when a “flare” or issue with side-effects will come up or go away. It’s not even clear to me how bad the “flare” is until it’s over.

I’ve had chronic illness issues for so long that, for the most part, I’m done being embarrassed by what chronic illness does to my body. (The acne and sweating/freezing bring up a special brand of middle school shame, but I have blundered through the weight gain, bloating, nausea, pain, nightmares, and everything else with as much grace as I can muster). But to have it disrupt my writing and thinking process for a long-ish period of time is/was unbearable. I think I found it even more upsetting because I’d pulled through different illness episodes before without feeling like I’d failed at anything. In college, I did my senior thesis research in bed, wrote rhetorical analyses from my parents’ couch, and punctuated my work with naps, Ben & Jerry’s, and pills, changing my pajamas every few days. And yet I was successful despite all of these things. Of course, I also had every economic, familial, and cultural advantage, which cannot be underestimated. (Like in so many illness narratives, the white, upper-middle class feminine-presenting woman with generous economic and emotional support from her friends and family pulls through). But in any case, it made this particular episode even more depressing than ones I’d experienced previously.

Perhaps this is also because I’m now a writing teacher. I teach the writing process. I preach the writing process. (Well, the idea that there are many processes, some of which work better for different people, and that one goal of first-year composition is to find one or more processes and composing techniques that work for you). Still, I struggled to put words on a page–my low-bar but high-impact goal for moving my thinking and my projects forward. I guess this isn’t surprising since I struggled to figure out what state (mentally and/or geographically) I was waking up in, but my inability to follow a reasonable, long-range-planning writing process made me feel like a failure.

As a writer and researcher, this experience generated a number of questions for me. I am usually pleased when kairotic moments bring up new questions–questions that can help me begin to solve embodied, everyday problems–but instead, these questions are making me nervous. What happens when we fail at a/the writing process? How do chronically ill individuals negotiate collisions of academic deadlines and flare-ups and unexpected complications? How and when do chronically ill academics ask for help, extensions, or forgiveness? How and when do we explain ourselves (or not)? If, how, and/or when do we share information about our health issues in a professional context?

As my incisive partner frequently reminds me, I’m “only human”…whatever that means. 

But for now, it’s time to rest and recover.

 

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“Patient” vs. “Health Seeker”

I was talking to my friend/colleague/research partner Jen about my attempts to visually document my pain and patient-hood through body part selfies over frozen yogurt on Friday afternoon. During the conversation, she asked me a deceptively simple question: “Why are you attached to the word ‘patient’?” I quickly replied that I understand patient-hood as an identity that is necessary for ill people to claim in order to receive appropriate care. In my experience, medical providers must somehow read* me as an ill person before they are willing to present treatment options. (I mean, why would you try to treat someone who isn’t sick?)  As usual, Jen brilliantly presented me with a compelling alternative term: health-seeker/health seeker. Over the course of our conversation, we agreed that this term might have particular affordances, i.e. benefits over “patient.” (Note: “affordances” is a popular term in rhetoric and composition studies right now, and it’s helpful for me to practice the lingo). Here are a few definitions that highlight some of these affordances via a brief Google and OED search:

Patient (adj., n): from the Oxford English Dictionary

Adjective

Having or exercising patience.

AND/OR

Enduring pain, affliction, inconvenience, etc., calmly, without discontent or complaint; characterized by or showing such endurance.

Noun

A person receiving or (in later use) registered to receive medical treatment, esp. at a particular establishment or from a particular practitioner; a person staying in a hospital for medical treatment.

AND/OR

A person who suffers from an injury or disease; a sick person. Obs.

AND/OR

A person who or thing which undergoes some action, or to which something is done; a (passive) recipient. Chiefly in contrast with agent.

 

Health-Seeker/Health Seeker (n):

1832   Chambers’s Edinb. Jrnl. 1 113/2   When a health-seeker takes a walk, he keeps his coat wide open.
a1953   D. Thomas Under Milk Wood (1954) 23   There is little to attract the hillclimber, the healthseeker. (from the Oxford English Dictionary)
AND/OR

Health seekers are mostly interested in investigating specific physical and mental ailments and their searches often are tied to visits to the doctor. However, they do not use the medical establishment or even friends to help guide their online searches when it comes to health care. Most health seekers treat the Internet as a vast, searchable library, relying largely on their own wits, and the algorithms of search engines, to get them to the information they need. Asked about the most recent time they got health-related information online, more than 30% checked out four or more Web sites. Younger health seekers and those with relatively high educations (at least some college-level work) are the most likely to have looked at multiple sites. (from a Pew Research Center study).

AND/OR

We define “health seekers” as all children, youth, teens, adults and families whose successful pursuit of health and well-being requires continuously supportive relationships and environments.” (from the YMCA of the Prairie).

Note: Apparently there is also a game called HealthSeeker, which uses social networking as a way to help people manage their diabetes.

My informal search revealed that “health seeker”/”health-seeker” is most commonly discussed a) in terms of the internet as a place for seeking healthcare information and b) at the intersection of religion and medicine. Fascinating.

As a budding rhetorician, I am deeply invested in naming as a political and cultural practice. I am especially interested in how ill people create new names for themselves. For instance, Jenni Prokopy, creator of ChronicBabe.com, calls herself and the other sick “chicks” who visit her website “Chronic Babes”; Marisa Acocella Marchetto similarly names herself a “Cancer Vixen” in her graphic memoir. They have rejected the term (and perhaps the identity of) “patient” in both its noun and adjective forms. They seem to enact more of a “health seeker” persona–researching specialists and possible treatments, endeavoring to live healthy lives despite illness, etc. I mean, I can’t blame them for not wanting to come across as weak, dis-agented, receivers of treatment. Yet I wonder if “patient” can still be useful, and if and how we should use it.

Later, it occurred to me that I hadn’t considered that the rhetorical problem of naming “patients” is just one of the naming issues at stake for ill people. Much of what has bothered me in my experiences as an ill person is my medical practitioners’ desire to too quickly diagnose–i.e. provide a name–for my collection of symptoms. I have found that “fibromyalgia,” one of my official diagnoses, has worsened the quality of my care and interactions with providers because so many providers do not believe that fibromyalgia exists, and thus, they immediately dismiss my case. The underlying stereotypes about ill women attached to such diagnoses certainly haven’t improved my ability to access effective treatments nor see higher-level specialists. In fact, I was able to get a referral to a top clinic at Johns Hopkins University when one doctor identified me as a potential Ehlers-Danlos Syndome case.

Preliminary Conclusions: It seems that I don’t even have to talk about the controversy of “Chronic Lyme” vs. “Post-Treatment Lyme Disease Syndrome” to make a case for the importance of naming for ill people. I guess there is a lot more to investigate….

A yellow-tinted photo of my knees and calves due to bad lighting in my living room. Rolled up purple sweatpants are visible.

Lyme Selfie #3: knees and calves. I think the color is so weird because of the dim lights in my living room. I’m surprised that I’m not in much pain today even though it’s 80% humidity and supposed to rain this afternoon. Gotta be thankful for moments of peace when I get them!

*”Reading” patients – I’m using this as a synonym for “assessing,” especially during intake sessions. I wonder if this is a common term or a writing thing that I’m superimposing on the biomedical sphere. If other people use “reading” as a verb in this sense, I think it adds to the current conversation about medical literacy….to be continued.

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